Long term side effects - fatigue & speech problems

bnhsah2017

Hi, In Jan 2017 my mom was diagnosed with Stage 3b, Her2+ on the left, and hormone-receptor + on the right. She had 6 rounds of chemo (TCHP), bilateral mastectomy, radiation, then some rounds of Herceptin, and was also taking Letrozole (supposed to for 5 years, but last month decided to stop due to some of the side effects). Starting in Jan 2019 she started having extreme bouts of fatigue, and several months later problems with her speech. The more fatigued she is, the worse the speech issues are (her hair also is still very thin). None of the tests are providing answers, just ruling out (which I know they have to do): had a brain MRI (no findings beyond typical aging - didn't point to issues), bone marrow biopsy, pulmonary workup, blood work (not anemic, thyroid is being managed and B12 is now good), and rheumatology panel (some tests came back abnormal but the less-than-helpful Rheumatologist said unless she had other symptoms, they couldn't diagnose). Nothing could point to the causes of her speech problems or fatigue episodes. She understands perfectly fine and knows what she wants to say, but just can't get it out correctly. Then recently, the episode was so bad, she just couldn't talk and later said her vision was blurry (silvery lines??) for a couple of minutes - it got better after she rested. I thought maybe she had a TIA? I'm just trying to help find any answers that may help lead us to a treatment for her. I've searched articles and forums. I know chemo brain can last years afterwards, but the Dr.s feel this is more than chemo brain (especially the extreme fatigue. Has anyone experienced speech/fatigue issues that occurred a year or so after treatment (she actually felt better the year she finished all her treatments in 2017-2018. I just want to help her - she was so active before 2017.

Moderators

Hi bnhsah2017, and welcome to Breastcancer.org.

We are so very sorry to hear what you and your mom are going through. It's obviously very scary and upsetting, but please know we are all here to help. You're sure to get some support from other community members soon; it's just a little quiet around here on the weekends.

Please keep us posted on what you find out and how your mom is doing!

--The Mods

flashlight

Hi bnhsah2017, My friend went through chemo and had some trouble with "chemo brain", but she never had a loss of speech. Sometimes the words would get mixed up and she corrected herself. We all do that from time to time as we get older. I feel our oncology team is very knowledgeable in their specialty, but outside of that not very much. That is why they tell you from the start to continue to see your primary. Even with covid-19 she should of went to the ED with loss of speech. Did she go into a deep sleep after the episode? My SIL had many small TIA's, but there wasn't any evidence on the MRI. She was seen by a neurologist and a cardiologist. I hope your Mom can get some help soon and be able to solve this problem.

ShetlandPony

It seems like an appointment with a neurologist would be wise.

bnhsah2017

Thank you all for your comments/feedback. She's doing much better this week. She has started sitting down and resting when she feels fatigue coming on worse (that's hard fro her b/c she has always been so active).

We've been in contact with her Primary Care during this time and throughout her treatments (he's great and her Oncologist sends her tests results to him when different tests are run), he's been part of some of the specialist referrals. We got in to see him this week (in person). He does not believe she had a stroke, but has referred her to another rheumatologist for a second opinion to see if it could be autoimmune related/disorder since some of her past rheumatology tests came back abnormal last year (the first Rheumatologist treated her like we were waiting her time because she wasn't experiencing any pain). We have that appointment later this month. Her primary also reviewed her brain MRI reports again and didn't see anything that could cause her extreme fatigue or other issues. I'll post again if we find out more.

Flashlight - thank you for sharing that information about your friend and SIL. I was worried it was a TIA (my Aunt has them) but her speech was the only thing besides being weak/fatigued, she understood me, never was "out of it" like my aunt briefly does, she acknowledged or agreed when I guessed what she wanted to say. Her speech came back within a few minutes of resting and even better hours later. No motor issues, she drank from a glass during that time, there was no face drooping or anything else. She didn't go into a deep sleep after that one episode, she just rested, then ended up watching the news and went to sleep a few hours later (I stayed on the couch that night to watcher her). I personally am not ruling it out still b/c everyone has different symptoms, but for now I'm just keeping a look out for any further symptoms or episodes.

Thank you all again so much. Support means a lot and helps with my worry and anxiety. I wish you all the best!!

flashlight

bnhsah2017, My daughter has RA and it is difficult to find the right doctor. There doesn't seem to be a lot of doctors in this specialty. Her pain started in her hands. Best wishes to you and your Mom. Maybe she is still deconditioned from her treatment? Last year I got down on my knees to dust and couldn't get back up without help. Yesterday, I went out to weed and I could get up! Hopefully she will feel stronger soon.

Krose53

Hi, I took letrozole and also had to stop due to side effects. I was having episodes of extreme fatigue, feeling like I might faint ( and did once ), slurred speech, dizziness and nausea. After laying down and resting these episodes would resolve. I stopped letrozoleand the episodes decreased and after 5 wks completely resolved. They have never returned. I hope this helps.

KARW41

My mother experienced fatigue for years after having breast cancer three times, including chemo and radiation a couple of times each also. She slept all day. I would personally think if the rheumatology lab work has some abnormal values, maybe there could be a more helpful rheumatologist out there?? It seems worth a try. There are also other chronic conditions that can cause fatigue and sleep issues, such as due to inflammation, as well. I’ve had Lyme disease myself and it caused those issues. I hope your mother is doing better and finds some insights for care.